I took the time to contribute to the health care survey on Change.org this morning. Since the story was fresh on my mind, I thought I'd share it here for those interested.
Mine is a horror story that spanned two decades, a story that finally ended within ten minutes -- ten minutes -- of consulting with a doctor for the first time, once I finally found a job with health care benefits, and it's a story that belies the assertion that Emergency Room requirements keep victims from falling through the cracks.
When I was very young, I noticed I had a large scar on my cheek that other kids didn't have. I asked my mother about that scar, and was told I was a "miracle baby," that I was "born blue." I didn't really know what that meant until much, much later when I was told the entire tale.
It started in September of 1963 with a nightmare for my mother and father.
My mother's water had broken, and I had dropped into the birth canal, but she was not in labor. They rushed to the hospital. As my father sat panicking in the waiting room, the doctor came out to talk to him.
According to my father, the doctor said the complications were too severe, and they were going to try to save my mother's life without any concern for saving me, the baby. It would not be possible to save both.
They used forceps to grab my head and rip me from the womb. I had been without oxygen for some time, and my skin was a very dark blue. I was resuscitated and lived, obviously, but my father and mother were told not to expect much from me -- I had likely suffered very serious brain damage, and would likely be severely mentally retarded.
Their fears faded over the next few years, as they watched me teach myself to read by reading the entire World Book Encyclopedia from cover to cover by the time I was six, without the benefit of kindergarten, and then excel in elementary school. As far as they knew, the nightmare was over, and I was going to be just fine.
I began hearing from God when I was about eight. I had been told by the churches I attended that I would be hearing from him, that I would be filled with the "holy spirit," and so when it started happening, I didn't question it. I thought it was part of growing up, nothing I needed to tell my parents about. It was normal. I looked forward to his visits, which came once every few months. They left me in a warm, dreamy sort of state afterward, and it was good to know he was talking to me. It meant he liked me.
Within a couple of years, my family collapsed, and I found myself living in poverty. And God's visits, once soothing and supportive, turned vengeful and angry. He began invading my mind dozens of times every month, and left me feeling drained. As I entered high school, I realized that this was not any deity touching my soul: Something was severely wrong.
My mother, rest her soul, was a tortured being through those years, and for that I forgive her, but she did not act when I tried to explain that something was wrong with my brain. The events were almost impossible to describe, anyway. She told me that I was a hypochondriac, and that we didn't have any money to waste on such silliness.
I kept meticulously detailed diaries of the events as they progressed, tracking between 200 and 300 of these things a year. They affected every aspect of my life. I couldn't date, because I was that "weird guy" who would just stop talking and walk away looking frustrated in the middle of a conversation, or sit in a corner with my head in my hands for 15 or 20 minutes without talking to anybody. My grades plummeted.
I started theorizing on what it could be -- a brain tumor, perhaps the onset of schizophrenia -- and the more they happened, the more I lived in terror of my own mind. I managed to earn enough scholarships to attend college, and while there, a friend told me that emergency rooms could help me.
After a truly severe bout with 12 "visits" in just 12 hours, I went to St. Elizabeth's hospital in Youngstown, OH, and told them something was happening to my brain. They would not speak to me, as I showed no symptoms by the time I arrived at the hospital. I tried this twice more, and was told the same thing -- no symptoms, no admission.
Around a thousand events later, I hyperventilated in order to have any kind of symptom when I arrived, and this time, they admitted me and listened to my story. A disinterested neurologist came to my bedside and, after glancing at my chart, told me I was having migraine headaches, without asking a single question or running a single test. When I mentioned there was no headache involved, he said migraines are like that sometimes. He didn't offer any treatment, any advice. He simply informed me and walked away.
It took me years to pay that bill in installments.
A year later, when the Reagan education reforms had cost me the grants that supplemented my scholarships, I had to drop out of school. I got the idea that perhaps I could join the military and get health care that way. Unfortunately, the diagnosis of "migraine" on my record precluded that, and I was refused entry.
I left the Rust Belt and went to Texas, where I reunited with a repentant father, and I earned a scholarship to Rice University there. My father left Texas soon thereafter, leaving me to try to work full-time and go to school.
One day, while sitting in a coffee shop next to a recruiter's office, I was lamenting about my problems meeting tuition and living expenses on a minimum-wage cashier job, when a recruiter overheard me and stepped in to offer the Army as a solution.
"Rice University? You got into Rice? Why we could use you in the Army -- someone like you can be officer material, yada yada...."
I told him that I had been deferred due to a diagnosis of a migraine.
"Well, if it hasn't happened since, we can give you a CT scan or something to show you're okay..."
By then, I knew I couldn't survive in the military, anymore than I could survive dating or a dinner party. But this man had just offered me a look inside of the brain that was tormenting me.
After my ASVAB, they were drooling, and sent me off for a CT scan. I waited and waited for the results. They also bribed me with dental work and glasses. I was now into them for several thousand dollars, and they started calling me daily to tell me that I must come down for the last step, the Army physical, otherwise they would be billing me for services rendered.
My solution was to purposefully fail the urinalysis. I never received the results of the scan. All I could do is hope that, if there had been a grapefruit-sized tumor in my brain, ethics would have made the doctors tell me about it. I was again deferred, of course, and left again without hope.
Although I worked very hard, my jobs were always low-end service jobs, minimum wage with zero health care until 1989, after I'd moved to Alaska and accidentally impressed a couple of people at a prominent engineering firm. I was hired in an entry level position, and health care kicked in 90 days later.
I made a doctor's appointment for the day the benefits kicked in. The GP referred me to a neurologist, whom I saw a week or so later.
"Why are you here?" the neurologist asked.
I told him I had been having these events in which I was flooded by Deja vu, followed by an inability to understand or speak language for several seconds to several minutes, and that these events drained me of energy and made me feel sickly afterward.
He asked for my medical background. I started with the birth story, and he stopped me: "Are you certain you were anoxic?"
"Yes," I said, and pointed to the scar on my face.
He reached behind himself and grabbed a tri-fold pamphlet off of a rack. "Is any of this familiar?"
On the cover was a young man writing feverishly into a diary late at night, along with the word, "Hypergraphia," which I recognized to mean, "lots of writing" from the word roots. I thought about the likely tens of thousands of pages I'd written to myself over the years.
Inside there were explanations of other symptoms I had, some of which, like the writing, I would never have associated with the events. The pamphlet was for something called "Temporal Lobe Epilepsy with Simple Partial Seizures."
I knew what epilepsy was, but I had never before heard of a form of epilepsy that did not cause unconsciousness.
He said he wanted an EEG to confirm it, but that I was a classic case of TLE.
A few days later, he called me back in. With a somber look on his face, he said, "Mr. [Kuparuk], I'm sorry to tell you that you have epilepsy..."
I started laughing and crying with joy. I don't think there's been a more joyful moment in my life. Even thinking about the moment now has brought a smile and tears.
"Um," he stammered, "That's not the reaction I expected."
Ten minutes. Ten lousy minutes with a doctor, and all those fears from all my life were gone. There was no schizophrenia. There was no tumor. It was just a tiny short circuit that couldn't do me any harm.
Even though I did not react to drug treatment, I had a rational explanation for what was happening. It changed my entire life, my entire outlook on life, and I was finally able to enter society, albeit gradually.
In the years since the diagnosis, the seizures have faded and all but disappeared, thankfully. When I have a stray one now, say, once every six months -- and this may sound strange -- I almost miss them. They were such an enormous part of my life for such a large portion of my life.
It's anecdotal, I know. But I believe these "falling through the cracks" stories are what we need to show the new administration in order to affect the health care changes we need.
Enjoy.